Parental perceptions of health-related quality of life in children with leukemia in the second week after the diagnosis: a quantitative model

Abstract

Purpose: The focus is on describing the child's health-related quality of life (HRQL) at the time of diagnosis as perceived by parents, by using an empirical model of their psychosocial context.

Patients and methods: Patients were 128 leukemic children and their families recruited at the Haematology-Oncology Clinic of the Department of Pediatrics, University of Padova. The families were interviewed by a clinical psychologist during the first hospitalization of their children using the Ecocultural Family Interview-Cancer (EFI-C). This interview aimed at understanding the family daily routines as it relates to the child with cancer and the meaning and experience of the situation. Demographic data about children and their families also were collected.

Results: The EFI-C interviews were read for content and then coded; these items were grouped into 11 major dimensions, three dealing with the child in the hospital and eight concerning the family. An empirical model of path analysis was estimated to evaluate perceived child's HRQL at the second week from the diagnosis inside the psychosocial context. This model shows that perceived child's HRQL is predicted by parental trust in the medical staff, perceived child coping, and perceived child adaptability. These last two predictors are in turn moderated by the fixed factor child age and mediated by parenting.

Conclusion: A better knowledge of parents' views and expectations regarding their children's HRQL during the first treatments for pediatric leukemia may facilitate the communication processes in the hospital and may help to provide improved psychosocial care for the child during the first treatments for leukemia.